UPDATE: We  have hit our initial goal! Thank you all so much for your generosity! Any additional funds raised could be used for current medical bills, and possible future treatment options (see below):
 
-Jill has about $2,000 of current medical bills from recent appointments yet to be paid (lots of cardiology tests and physical therapy bills).
-If this upcoming treatment on September 20th does not fully resolve her symptoms, she is anticipating about $8,000-$15,000 more in future treatment costs to try other alternative treatments. This amount includes the costs of another intensive (at a specialist clinic in CA) using reactive physical therapy, follow-up tests/treatment with a neurologist, and possibly trying some alternative treatments like NUCCA chiropractic treatment, hormone testing, acupuncture, and Transcranial Magnetic Stimulation.
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Jill was recently diagnosed with POTS & Dystonia. This fundraiser is to help cover the cost of a week-long intensive treatment with a functional neurologist who specializes in Dysautonomia and Brain injury. Jill's treatment with this specialist begins Sept. 20th, which gives us plenty of time to lift the worry of finances off Micah & Jill's shoulders before Jill leaves. Keep reading to hear Jill share about her year-long journey seeking to find answers and treatment for these health issues.

--Rachel Legg

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Hi friends and family,

 

It feels very surreal to be saying this right now, and I’m still processing the news. The more that I process, the more questions I have…and when I get answers, the more I have to process! I still have a lot to learn about these diagnoses, so I will try my best to explain it.

 

I had the second concussion of my life a year ago, in September 2020, and another concussion in January 2021. Both were freak accidents, and I was re-concussed by my toddler a few times following each of those concussions. From what I now understand, the Basal Ganglia portion of my brain was injured, as well as some issues with my eyes and vision. I’ve known that I had post-concussion syndrome for a while now, and my symptoms were not going away even with physical therapy treatments. I thankfully joined a concussion group with some online PTs that specialize in concussion treatment, which eventually led me to wondering if I had POTS.

 

POTS stands for Postural Orthostatic Tachychardia Syndrome. This means that my heart rate shoots up too high when I stand up, and ongoing as I’m sitting or standing (i.e. not laying down flat), my heart rate peaks and dips too much. Specifically I have Hyperadrenergic POTS, which is a form of Secondary POTS, meaning something else is causing it. I’m not very worried about this diagnosis, as I’ve been treating myself for it at home for months and have learned how to cope with it. Dr. Keiser (who I am doing an intensive with in about a week) is confident the POTS is treatable and will not be a long-term issue. It does cause me to hyperventilate a bit, so be praying for me this week leading up to the treatment and on my drive to Michigan!

 

POTS can be very hard to live with, but I am very thankful that I started my own private practice counseling business right before my symptoms got too bad, so I’m able to control my schedule and build in time for my own at-home exercises which help a lot. I am often able to lay down in between sessions, wear compression socks, take salt pills and drink electrolyte drinks to help with this. Overall, it’s a disorder with the autonomic nervous system, which controls all of those automatic functions your body does (like breathing!) POTS is one form of Dysautonomia.

 

After almost a year of being in various physical therapies, and lots of recent tests with a cardiologist (who didn’t think I had POTS but is who typically diagnoses POTS), I decided to go see a specialist in Michigan who specializes in Dysautonomia and Brain injury. He is a functional neurologist and did lots of testing, and confirmed that I did actually have POTS. He also diagnosed me with Dystonia, which was completely unexpected (on my end).

 

Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. Dystonia is a neurological disorder, and has several types and causes. The scary part about this recent diagnosis is that we don’t yet know what caused it, and if it was caused by the concussion (and is therefore more treatable), or not. Dr. Keiser had some concerns from his testing that I may have had Dystonia for some time. If it’s functional movement disorder type of dystonia, and was caused by the concussion (maybe even my first concussion which was 10 years ago in a car accident), it seems to be pretty treatable.

 

If I somehow already had Dystonia from some other cause, the outlook is a bit scarier. I have generalized Dystonia, which means that it’s impacting many areas of my body. It seems there are less treatments for this than for types of dystonia that just affect one area of the body, but I still have a lot to learn. The biggest issue it is causing for me right now is that the muscles around my ribs are over-contracting at all times, which makes my ribs unable to expand enough to get a good breath. This in and of itself could be causing the POTS, or vice versa. So, both of my conditions are currently causing me to struggle to breathe, and I am extremely thankful to be getting back in with Dr. Keiser in the next week or so to start treatment.

 

Neither of these diagnoses have a known “cure” that mainstream healthcare providers use. I do feel hopeful in working with people that specialize in these things that they do have ways to treat these disorders, as long as they really did come from the concussion (and maybe even if they didn’t). But frankly, this is scary. So far, they make it hard for me to play with my child, or carry her, or read her a story before bed, and just cause a constant fatigue and exhaustion throughout my day. I’ve had ongoing issues with dizziness and my eyes/vision all year, but some of these other things have gotten worse with time. Sometimes Dystonia gets worse with time, especially the generalized kind, and that could eventually lead to me being essentially crippled, and/or getting brain surgery to try to regulate things. I’m really trying not to think about that right now, and plan to faithfully do one treatment at a time. I am determined to get better, and having the funds to do these treatments would be incredible.

 

THANK YOU from the bottom of our hearts for even considering giving. We know there’s a lot going on in the world right now, and deeply appreciate your encouragement and support.

--Jill Potter-Bonsell

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Jill and Micah have already spent around $10,000 in medical bills this year between Jill’s many treatments and doctor’s visits, and Micah’s sleep studies and neurology visits due to his recent diagnosis of Narcolepsy.

 

The cost of the upcoming week of intensive treatment that Jill will be going to on September 20th is $8,000. This includes the cost of the treatment itself, hotel stay, and loss of income for the week, plus food and gas. The treatment will not be covered by insurance, and is therefore out of pocket. Our hope is to raise at least $8,000 with this fundraiser to cover these costs!

 

Any additional funds raised could be used for current medical bills, and possible future treatment options (see below):